December 7, 2016 - More than 11 years ago, a report from the Institute of Medicine recommended that every cancer survivor should have a comprehensive care summary and follow-up plan, or a survivorship care plan. However, a recent survey found that more than half of the 500 gastrointestinal cancer patient participants didn’t know what a survivorship care plan was.

The survey was discussed during a December 3 panel at the Seventh Annual Ruesch Center Symposium, titled “Fighting a Smarter War Against Cancer.” More than 400 health professionals, patients and advocates attended the symposium in person at the Georgetown University Hotel and Conference Center or via a live webcast.

Martha Raymond, MA, CPN, executive director of Michael’s Mission and founder of The Raymond Foundation, conducted the anonymous online survey to explore the unmet needs of patients with gastrointestinal cancer. “We met our goal and it was just a great response,” Raymond said. “We really did get some very rich data.”

More than half of the patients surveyed reported feelings of anxiety, fear, depression and sadness during their diagnosis, treatment or survivorship. “A lot of those responses were from individuals who felt isolated,” Raymond said. “It makes you very sad to hear these things.”

Facing Feelings and Relationships After Treatment

Many gastrointestinal cancer survivors indicated that they were unprepared for life after being cured. Feeling lost and isolated, unsure of what comes next and survivor’s guilt were all mentioned by the survey respondents.

“We frequently hear patients say that after learning they have cancer, learning that they have been cured is the hardest thing to hear,” said Paula Rothenberg, president and CEO of Hope Connections for Cancer Support.

Changes to relationships in particular can be challenging for cancer patients and were a major topic of the survey. Caregivers want to do everything they can to help their loved ones but they don’t always know the best way to help, Raymond said. Friends may withdraw from patients because they don’t know what to say while patients in the workplace don’t know how much to share with their colleagues.

As a brain cancer survivor, Craig Lustig, associate director of the Ruesch Center for the Cure of GI Cancers, said that he felt angry in the aftermath of his illness. Family members and friends may want to celebrate after a patient is cured but it can be difficult for the patient to snap back, he said.

Adjusting to the New Normal

Not knowing what to expect physically can cause stress in cancer survivors, Rothenberg said. For example, patients sometimes feel like failures when they are cured because they’re often tired, not knowing that post-cancer fatigue can last for years.

Health care providers should talk to patients about what they can expect physically and emotionally after treatment and develop a survivorship care plan detailing issues like how patients will interact with their primary care physician going forward, Rothenberg said.

“Patients need to know that it’s okay to feel how you’re going to feel,” Lustig said. “You’re a different person but cancer is just part of your life.”

“You need to be able to get to a place where you can say, yes, I could have a recurrence tomorrow,” Lustig added. “None of us are going to be here forever.”